Be Different
Page 17
By contrast, people with traditional autism usually have trouble with language. As toddlers, they often don’t speak much, and if they do, they often have significant speech impairments. Some kids overcome the impairments as they get older, but for others it’s a lifelong disability. It’s a mystery why most kids with autism have trouble with language, but we Aspergians are often the opposite, with exceptionally clear and precise speech.
One day soon, science may give us a lab test that identifies people with autism or Asperger’s. That would be great, because it would eliminate confusion and misdiagnosis, just the same way testing for blood type saves trouble in the hospital. But until then, we must rely on asking questions, making observations, and making a judgment based on experience.
Take the Test
Just the other day, a middle-aged fellow approached me and said, “I think I might have Asperger’s. Do you think there is any point to my getting tested, or am I too old?”
I looked at him as I pondered the true meaning of his question.
“You do look pretty old,” I said. “But I’ll bet you could still take a test. Maybe they even have a simplified version you could try.” I tried to look encouraging, but I’m not too good at stuff like that.
“That’s not what I meant,” he said quickly and with a hint of annoyance. “I was wondering if getting tested would serve any purpose!”
Now that his meaning was clear, I gave his new question more thought. Why do people get tested for neurological differences like Asperger’s or autism? Most testing is done on kids, for a variety of reasons. However, it all comes down to one thing: Knowledge is power. Knowledge may also be scary, but it is absolutely empowering. Without it, there is just fumbling and guessing.
My own life has illustrated that clearly. For my first forty years I was unaware I had Asperger’s. I knew I was different, but I didn’t know why, and that lack of knowledge suffused me with a feeling of inferiority that permeated and poisoned my life. Those feelings handicapped and hampered me in countless ways.
Learning that I was a perfectly normal Aspergian male (and not a freak) was a revelation that changed my life. Actually, “changed” is too mild a term. Understanding of Asperger’s, and what flowed from it, turned my old life right on its ear and set me on a new and brighter path that I’m still following today.
If you are a teenager or even an adult who just feels different, the insight you can get from testing may be the best thing to ever happen to you. It can also be scary, but remember that whatever you learn about is already there, inside you. Self-knowledge can only be beneficial.
As for kids, they get tested when they don’t do what’s expected of them. For example, a tyke who doesn’t talk when grown-ups think he should gets tested. A kid who never looks at people gets tested. There is this presumption in our society that all kids should talk and look at people, and woe to the toddler who fails to comply. If you’re older and flunk out of school, you might get tested. If you don’t act like the other kids, you are probably going to get prodded and measured until someone puts a name to your differences.
Of course, most testing of kids is initiated by observant grown-ups. Kids do not start the process on their own. I have never once heard of a first grader saying, “Mommy, can you test me for neurological differences?” In fact, I think it would be nothing short of remarkable to hear a question like that from a kid, even in today’s enlightened times.
A six-year-old who gets tested probably can’t make use of the results on his own. They’ll be a big help to his parents and teachers, though, so the process is still important. A teenager is another matter. A fifteen-year-old can certainly take an Asperger diagnosis and run with it. He can read up on what it means and what he can do about it. A diagnosis can give a kid who wants to change his life a solid road map, and what better gift could there be?
There are some who dismiss the value of testing and diagnosis, saying, “Who cares?” Well, I speak from experience when I say I care. And many of my friends on the spectrum would say the same thing. There are others who say, “There’s no such thing as normal!” To them, every single kid has a diagnosis waiting to be found. I understand their point, but I can’t say I fully agree. If you are a person who struggles with some kind of disability, it’s better to know what you’re facing in the light than to struggle endlessly in the dark. Good test results can provide that illumination.
Psychologists believe that as many as twenty-five percent of the kids in our schools have some diagnosable disorder. Only a fraction of those kids get a diagnosis, though, and of that group, only a few receive any therapy or treatment. So lots of kids slip through the cracks, many Aspergians among them.
I didn’t learn about my own Asperger’s until I was forty, but the changes and growth I’ve experienced as a result of that insight are beyond words. And the same thing could happen to you or to someone you know.
I don’t think there is any downside to being tested, but there are those who disagree violently with me. They say an Asperger or autism diagnosis can be devastating. There’s some truth to that. It can be a blow, finding out you have a neurological difference that won’t go away. But is living in ignorance better? I believe that no matter what the test results show, you will know more about your mind and the way it works. Testing is a tool to improve your life and make yourself more successful. And you don’t have to be scared—the testing doesn’t hurt much. There are no side effects.
When I talk about what testing and diagnosis have meant to me, I recall how they helped me understand exactly how my mind differs from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked.
Some people miss out on the benefits because they become sidetracked by preconceived notions about “having a diagnosis.” Instead of looking at their own specific issues, they look at broad statistics associated with their condition. They see phrases like “thirty-two percent can’t live independently” or “sixty-six percent never get married and have a family.” Those numbers make them forget that they have power over who they become as individuals. They interpret those general statistics as a prediction for their own future, when it’s nothing of the sort.
More specifically, they see their future as inexorably tied to every unfavorable broad statistic associated with their diagnosis. In that sense, some see an autism diagnosis as a sentence to some kind of living death. They get swallowed up by the negative features of their diagnosis, forgetting that they’ve lived their lives before and that life goes on after. In short, they allow themselves to become victims of a label.
That is the danger of diagnosis. Some people read what’s associated with a label and make it self-fulfilling. They let go and become the worst of what they read. That negative outcome can be reinforced by teachers and adults who say or think, “He has a diagnosis of autism. We can’t expect too much of him.” That is most assuredly not the way I have lived my life.
It does not matter what sixty-six percent of people do in any particular situation. All that matters is what you do.
Other critics focus on the danger of a wrong diagnosis. Many parents have experienced this with their kids. They get referred for testing, and the first psychologist says the child has ADD. But then another round of tests with the next shrink points to PDD-NOS. More tests and more doctors take us back to ADHD, then Asperger’s. They bounce from one diagnosis to another, never really knowing what to do or where they stand. In some cases, kids are given medications, and a medicine that’s good for one thing can be bad for another.
That situation happens most often with very young children, most of whom don’t have much input into their diagnosis beyond answering the questions on the test. Teenagers and adults are another matter. We can take a diagnosis, read up on it, and ask ourselves if it makes sense. If it doesn’t, we can go back to the doctors and the test results and figure out wh
y.
I agree that seriously wrong results can be worse than no results at all. But the same can be said of any kind of medical testing, and ultimately, all we can do is make our very best effort.
Most people go into testing in search of an answer, and most psychologists do their best to get the right result. You might say the shrink’s job is similar to a car mechanic’s. If you go in with a transmission problem and the mechanic overhauls your engine, you aren’t going to be much better off than when you arrived and you’ll be a whole lot poorer. Luckily, the skill level of psychologists is more consistent than that of auto mechanics.
How do you find a competent psychologist? Most people don’t have the technical knowledge to evaluate a psychologist’s skill. We must figure out another way to decide. For me, two words sum that way up: trust and confidence.
Whenever I need the services of a specialist in any field, I ask him to explain whatever he proposes to do. I listen carefully to what he says, and I form an opinion about his abilities. Is he able to show me what he wants to do? Is he ready and able to answer my questions? Is he really at ease explaining things to me, which tells me he really knows his stuff? These questions apply to psychologists.
In my experience, competent people know how to explain themselves. That’s an essential component of competence for most professionals. That’s how I make my decisions about whom to trust, and I sharpen that with experience and the recommendations of others I also trust and respect.
Keep your local mental health workers employed, and improve your life at the same time. Take the test.
Index to Aspergian Behaviors
Body language and other nonverbal communication are described in “(Not) Reading People,” “Emotional Triggers” (on this page), and “Making and Keeping Friends” (on this page, this page, and this page).
Brain plasticity is discussed in “Underwear with Teeth” and “Plastic Brains.”
Bullies and what to do about them is discussed in “Lobster Claws: Dealing with Bullies” and “Animal Wariness.”
Difficulties in understanding social situations and other people’s thoughts and feelings are discussed in “The Center of the Universe,” “(Not) Reading People,” “Making and Keeping Friends” (on this page), and “Feeling Bad News” (this page).
Difficulty with the communication and control of emotions is discussed in “Finding Your Path to ‘Fitting In’ ” (on this page), “For the Love of Routine” (on this page) “Feeling Bad News” (on this page), and “Learning Calculus” (on this page).
Discomfort in crowds is discussed in “Animal Wariness.”
Failure to develop peer relationships is described in “Asperger’s and Me” (on this page), “Finding Your Path to ‘Fitting In’ ” (on this page), “For the Love of Routine” (on this page), “Making and Keeping Friends” (on this page and this page), and “The Center of the Universe” (on this page).
Inappropriate expressions and responses are discussed in “Lobster Claws: Dealing with Bullies” and “Making and Keeping Friends” (on this page).
Frequent tendency to say things without considering the emotional impact on the listener is discussed in “Emotional Triggers” (on this page and this page), “The Art of Conversation” (on this page), and “Getting Chosen” (on this page).
Impairment of comprehension, including misinterpretations of literal/implied meanings, is disscussed in “Mind Your Manners” (on this page) and “Emotional Triggers” (on this page).
Inability to recognize when the listener is interested or bored is discussed in “Mind Your Manners” (on this page).
Internalizing other people’s problems—which is different from self-centeredness—is described in “Feeling Bad News.”
Irrational fears are discussed and explained as perhaps not so irrational after all in “What Are You Afraid Of?”
Lack of social or emotional reciprocity is described in “(Not) Reading People.”
Lack of varied, spontaneous make-believe play is discussed in “For the Love of Routine” (on this page).
Making friends is discussed in “Getting Chosen” and “Making and Keeping Friends.”
Marked impairment in the ability to initiate or sustain a conversation with others and to see the point of superficial social contact, niceties, or passing time with others, unless there is a clear discussion point/debate or activity, is discussed in “Mind Your Manners” (on this page), “Getting Chosen” (on this page), and “Seeing Music” (on this page).
Peculiar names Aspergians give to people and things are discussed in “What’s in a Name?”
Perseveration is described in “A Reason to Care” (on this page).
Restricted and repetitive patterns of behavior and interests are discussed in “Rituals, Manners, and Quirks,” “For the Love of Routine,” and “Learning Calculus” (on this page).
Seeing the world through different eyes is described in several chapters, including “A Day at the Races,” “Seeing Music,” and “Lobster Claws.”
Self-centeredness and what it means are described in “The Center of the Universe.”
Sensory integration problems are discussed in the chapters “Underwear with Teeth” and “Managing Sensory Overload” (on this page).
Socially inappropriate behavior is described in “Mind Your Manners,” “For Love of Routine” (on this page), “A Reason to Care” (on this page), and “(Not) Reading People” (on this page).
Special interests and fixations are discussed in “Attention to Detail,” “Learning Calculus,” “I’m with the Band,” “Finding Your Path to ‘Fitting In’ ” (on this page and this page), “What Are You Afraid Of?” (on this page), and “Seeing Music” (on this page and this page).
Unusual language abilities that include advanced vocabulary and syntax but delayed conversational skills are discussed in “The Art of Conversation.”
Unusual profile of learning abilities is discussed in “Learning Calculus” and “Plastic Brains” (on this page).
Unusual sensitivity is described in the chapters “Underwear with Teeth” and “Managing Sensory Overload” (on this page).
For Further Study
Autism Centers and Professionals
There are many good autism centers around this country. All the places I’ve listed below are associated with leading medical colleges and offer services ranging from behavioral therapies to testing and interventions. I apologize in advance for not including more facilities; this list is limited to the small number of places of which I have personal knowledge through my work on autism grant review boards.
UC Davis MIND Institute
2825 50th Street
Sacramento, CA 95817
(916) 703-0280
www.ucdmc.ucdavis.edu/mindinstitute/contactus/
Asperger’s Syndrome and Autism Disorders Clinic
Beth Israel Deaconess Medical Center
330 Brookline Avenue
Boston, MA 02215
(617) 667-4074
www.bidmc.org
Mass General Hospital
YouthCare Programs for Kids and Teens with Asperger’s
15 Green Street
Charlestown, MA 02129
(617) 726-0062
www2.massgeneral.org/youthcare/
University of Michigan Autism and Communication Disorders Center
1111 East Catherine Street
Ann Arbor, MI 48109-2054
(734) 936-8600
www.umaccweb.com/
Kennedy Krieger Institute
707 North Broadway
Baltimore, MD 21205
(443) 923-9200
www.kennedykrieger.org/
Thompson Center for Autism and Neurodevelopmental Disorders
University of Missouri
205 Portland Street
Columbia, MO 65211
(573) 882-6081
www.thompsoncenter.missouri.edu
Mount Sinai School of Medicine
Seaver Au
tism Center
1428 Madison Avenue
New York, NY 10029
(212) 241-0961
www.mssm.edu/research/centers/seaver-autism-center
The Children’s Hospital of Philadelphia
Autism Center
34th Street and Civic Center Boulevard
Philadelphia, PA 19104
(215) 590-7500
www.chop.edu/service/autism-center/home.html
UW Autism Center
Center on Human Development and Disability
Box 357920
University of Washington
Seattle, WA 98195
Toll-free Information & Resource Line 1-877-408-UWAC
(206) 221-6806
www.depts.washington.edu/uwautism/index.php
University of California at Los Angeles Center for Autism Research & Treatment
Jane & Terry Semel Institute for Neuroscience & Human Behavior
300 Medical Plaza
Los Angeles, CA 90095
(310) 794-4008
www.semel.ucla.edu/autism
Yale Child Study Center
230 South Frontage Road
New Haven, CT 06520
(203) 785-2540
www.childstudycenter.yale.edu/index.aspx
You can find an updated and expanded version of this list on the www.johnrobison.com website. There is a much larger list of resources on the Autism Speaks website, at www.autismspeaks.org/community/resources/index.php, and on the Autism Society of America website, at www.autism-society.org.
Schools
There are a number of very different strategies for educating and socializing kids with autism. In my opinion, there is a place for every legitimate method because kids with autism are so different and varied. However, schools tend to adopt a single method like ABA (Applied Behavior Analysis) or RDI (Relationship Developmental Intervention), so a place that gets wonderful results for one child may not succeed at all for another. For that reason, you should be prepared to try several schools with different approaches to see what works for you.